Tag: help

I would like to start this post by saying, that ANYONE who knows me, knows I don’t get offended easily. Pretty much anything , anybody says, just rolls right off my back.

However, I just recently read an article , with MEMES to go along with it, that just totally rubbed my fur the wrong way.

And once you read it, I am fairly sure you will feel the same way.

To start this off, I always thought the idea behind childbirth was to have a HAPPY, HEALTHY child. One for the parents to love, and one to love the parents.

WELL, this fella ‘ here has just set childbirth, and childrearin’ back 100 years and caused a great deal of unhappiness between women. When you read it , you will understand, and be just as outraged as I was. Seriously, this man is half a bubble off of plumb, a donut short of a full box, and as my Daddy would say, “His bread’s in the oven , but the gas ain’t on. ” The word chauvinist doesn’t even BEGIN to cover it.

Because apparently , those of us who had C sections are INFERIOR.

Because , apparently, we didn’t REALLY LOVE our babies, we are just selfish for making different choice.

Because apparently , we’re just drug-addled women , who are lazy and chemically dependent.

So we have no business having doctors interfere in the “natural” process of birth, even though our children came early and would have died without medical intervention. We’re just lazy like that. Needless to say, I refuse to feel sorry for my childbirth experience , as my sons are 16 and 14 and are completely healthy , despite the fact that (SHOCK AND HORROR!!!!) they were both born by Ceasarian section.

Everyday , I wake
and wish that somehow my life had changed.
This is not the ONE I ORDERED,
somehow things got rearranged!
Where do they keep the paperwork?
Are there forms I need to fill?
Take back this life of pain! Despair!
Make me normal still!
Somehow, I feel quite cheated!
As if somewhere else on earth,
someone has the life I requested,
switched maliciously at birth.
I know the truth cannot be altered,
it leaves its indelible stain,
lupus TRIES to take my body,
but still I here REMAIN.

I’ve always loved to write. As far back as I can remember words have held a certain magic for me. My mother tells me I learned to read and write when I was only 3 years old. Of course the fact that I had an older sister who loved to play school , and I was her only sometimes (unwilling!) student might have come into play with that! But since finding out that have lupus almost 15 years ago, writing has taken on a whole new meaning for me. Lupus is a terrible disease. It takes over every aspect of my life, and for a long time I didn’t know how to deal with it. I was very young when it started affecting me, (14) , and they had no answers, as to what might be wrong with me. I went from doctor to doctor for about 5 years before I got a diagnosis at age 19. I actually don’t count those five years in the 15 , although I guess I should! But when I got diagnosed the whole world spun out of control. See the thing was , being diagnosed happened in the middle of the day, while having the ultrasound of my son at 32 weeks. Something was going on with his heart, his heart rate was plummeting. Turns out, my body was trying to kill him. Lupus does that. So, they had to rush to get him out of my body. Bam. I was a mom. 8 weeks before I was supposed to be. Bam. Your baby has this heart condition that’s permanent. And YOUR body did this to him. BAM. HE MAY DIE. Double whammy . Triple whammy. Your body goes into some kind of terrible spiral of hormone induced hell of a lupus flare . I was 19 years old. So this was my introduction to being diagnosed to lupus. Trying to survive the very start of it. Almost being relieved that I Hadn’t been crazy for all those 5 years my body had been so sick before. Guilt that I had made my baby sick. FEAR. Mind-numbing, body-wrenching fear. Life is never going to be normal again. So what does all this have to do with writing? Well, when you have no one in your life around you who has EVER experienced anything remotely close to that, who do you talk to? What do you do with all that bottled up, pent up , crazed , what IS THIS STUFF I’m feeling?!? You write. And write. Until all the fear, and horror, and pain, is left bleeding on the page. Even if no one else ever sees it, it has left it’s stains on the paper instead of on your life, and hurts maybe, just maybe a tiny bit less. So if you have lupus, or depression, or arthritis, or just don’t know what to do with your thoughts sometimes, write. Because there is no “write” or wrong way, to do it. Write, until they no longer fill your mind. Fill the page with all that burns, and then let it go.
P.S. Here is a poem I wrote recently in one of those burning moments. Hope you like it.

Since the subjects on my blog lately have seemed to revolve around the medical industry, pharmaceutical industry, or healthcare, I decided that today would be a good day to dedicate the post to what friends and family, could, should, or in some cases shouldn’t do when a loved one is ill.
Now , before I start, please know this. I have been a chronically ill person for almost half my life. I ‘ve been in , out, around, up and down with the whole medical business. I also have a habit of saying things without thinking about it first. So, for this post please, please, please try not to be offended if I come across as rude, or unthinking. Believe it or not, I have some experience with this particular subject. Now, rocket science, or alternative music, I will leave to the experts on those particular subjects! Now, onward and upward!

Things That Are Nice~
1. Short , “Hope you are okay , phone calls”
I love to talk. But when I am sick, and tired, phone calls can be draining . I am glad that you thought of me! But having to do more than string two thoughts together can be exhausting , I’m sorry! 🙂
2. Asking “Could I do anything for you? If so, let me know.”
You don’t have to offer money , or flowers. You don’t even have to offer housecleaning. But it is nice to offer. One thing, though? Don’ t offer if you DON’T really plan on doing anything if I call on you.
3. Saying “I’m praying for you. ”
And leaving it at that.

Things THAT ARE NOT SO NICE~
1. Long , protracted phone calls.
I am sick. I just got out of the hospital. Please understand. I love you. I really do. But , my brain hurts.
2. Showing up unannounced.
See first answer.
3. Asking overly nosy questions as to what happened.
I have lupus. It is not going to go away. I will be tired. I will be sick. I probably even will be in and out of the hospital from now on. This is NOT being negative, just realistic. I know it is very hard for people to understand how I could be only 33 years old, and feel 93. They must think , “Well, geez. It couldn’t be THAT bad. ” Well. It is. So, deal with it. I am.

And I do want to add , less this makes me sound like an ogre, I have wonderful friends. I have fantastic family. I am blessed beyond imagining to even wake up every day. But, certain ones have asked, “How could I make your life, or journey with this pain easier?” . Well, these are some of the ways you could!
Think about the fact that if I seemed reluctant to have you come visit, that perhaps I have an embarrassing lupus rash. Or my house is dirty because I wasn’t able to get up. Or maybe I haven’t even felt like combing my hair yet today, and feel “ugly”.
Maybe if I seemed unkind on the phone, I had just taken some of my many meds and my mood is not what I would have wished.
Maybe if I didn’t remember to call you when I got admitted to the hospital, it was because I hurt so badly that my caregiver had their hands full with just getting the nurses to make sure I was getting pain relief, and phone calls were far from their mind.
I said all that to say this, “You weren’t unthought of!” “I love my friends and am so appreciative of them!” and remember that my only goal some days is to make it through to the next one. So, please if you felt slighted in any way by my actions, or lack thereof, it was nothing personal. I’m fighting for my life, here, for lack of a better way to put it. I hope this helps make it a little easier to understand. Thanks for listening!

Like this:

I had fully intended to write every day in February! But it seems like every time I make that promise to myself, something comes up, and I end up falling behind. I have not felt well at all the last few weeks. I never knew that your gallbladder could cause you such trouble! Or that trying to get someone to take it out would take such a long time to get set up. Usually doctors are lining up to take my money but not this go around.

So, on to my list of people I appreciate for the last few days! I have to list my kiddos. They have been so patient with me, and understanding about how bad I’ve felt. They’ve done laundry, dishes, and all the other chores without complaint. They’ve waited on me and just generally been sweet.

And my friends have all called and volunteered to do all kinds of things . From watching the boys to doing my grocery shopping. I am a seriously blessed individual.

But anyway, if I don’t get here for the next few days, I HOPE it’s because I’m getting my gallbladder taken out!

I’ll catch up on my gratitude list when I get to feeling better! Hope this finds everyone having a good day!